Lybba’s partner, Cincinnati Children’s Hospital Medical Center (CCHMC), was recently featured in Forbes’ Profiles in Innovation, a weekly series of interviews with pioneering health leaders who are improving both population and individual health. CCHMC, renowned for children’s cancer care, is now working tirelessly to reduce health disparities in the local Cincinnati community. Its Community Health Initiative, led by program director Robert Kahn, is using comprehensive data collection to implement preventive measures against injury and illness.

An early example from this data collection indicated that particular Cincinnati neighborhoods had high rates of childhood asthma whereas other neighborhoods had virtually none. Neighborhoods with more asthma cases tended to have poor housing conditions, and more families without medical insurance and access to medicines. Since such factors are difficult to detect during a 10-minute conversation in the exam room, CCHMC’s Community Health Initiative partnered with the Cincinnati Health Department and Legal Aid to provide home inspections and legal advocacy. Preliminary data collection, therefore, enabled pattern recognition which led to problem solving and a larger, more sustainable impact on the community.

CCHMC’s commitment to health, not just health care, extends to their James M Anderson Center for Health Systems Excellence where a dedicated team of individuals is re-thinking chronic illness care. For the past several years, Lybba has been working side-by-side with CCHMC’s Anderson Center on the Collaborative Chronic Care Network (C3N), which is using software-based data collection tools to enable patients with chronic illness to become more active participants in their health and to spread discovery amongst doctors and hospitals.

C3N has reported significant increases in remission rates for patients with Inflammatory Bowel Disease (IBD), without the use of new medications. A few weeks ago, C3N was awardedPCORI funding to continue their transformative work in IBD. To learn more about C3N and Lybba’s involvement, visitc3nproject.org.

Based out of Cincinnati Children’s Hospital Medical Center, C3N assists pediatric patients with IBD. Patients and clinicians work together to develop data collection tools, protocols and reports that determine individualized combinations of treatments and lifestyle modifications. By providing a controlled environment for patients to experiment, C3N supports patient activation and encourages self-directed care, while allowing doctors to improve the quality of the clinical experience.

The Challenge

For patients to participate fully in the C3N, they need to be able to interact with each other, communicate with their clinical care teams, keep track of their symptoms and manage their treatments. C3N needed to provide accessible tools for both patients and care teams to engage both in and out of the doctor’s office.

The Strategy

Lybba created the C3N platform to help patients track their health between appointments, visualize their health over time via clear and engaging graphics, more easily communicate with their physicians using online and mobile applications, and even choose to share their medical data with other patients and researchers. The system also provides a support mechanism for parents and a quick, easy way for researchers and clinicians to get the data they need to make quality improvement decisions in relation to the care of their patients. By increasing patient engagement, the C3N can transform the experience and outcomes of illness, and accelerate the discovery and application of new knowledge.

The Results

By combining large data registries and making them accessible and interactive, the C3N Project drives action and innovation to create a more reliable and accountable care delivery system for children and their families dealing with chronic gastrointestinal diseases. Since beginning in January 2010, C3N has:

Assembled a diverse team of experts from medicine, public health, psychology, computer science, film, design, law, sociology and economics.

Created an initial innovation network of more than 100 patients, clinicians, and researchers - all contributing actively to the C3N for IBD.

Designed and put into prototype testing 14 innovations.

Won a $12 million grant from the US Agency for Healthcare Research and Quality to build the data and informatics infrastructure for the C3N data network.

Put into practice policies for overcoming barriers such as concerns about intellectual property, data sharing and privacy, and medicolegal liability.

Designed the architecture and specifications for the communication and technology platform necessary for patients, families, clinicians, and researchers to collaborate.